February 2008

 


 

 

Name Of Column Author Title Article Type
News Views Pat Sanders New Website Map News & Events
News Views Pat Sanders New Volunteers News & Events
Voice Points Lisa Proper-Coordinator Head & Neck Radiation-Part2 Education-Med
A Scottish Accent Rosalie Macrae Rosalie Macrae Wants Her Identity Back Experiences
Vicki's Midnight Train Vicki Eorio Don't Block My Blessing Experiences
Between Friends Donna McGary Moving On Experiences
Practically Speaking Elizabeth Finchem Overcoming Myths Experiences
New Members Michael Csapo Welcome News & Events

 

 

 

 

New Website Map

 

 

Several years ago when we had the original site, it grew to be a bit topsy-turvy as we kept adding sections.  While you could usually find something if you looked hard enough or long enough, you could also get lost and there was no overall picture of how it was put together. We finally built a website map, which is a chart of how the site was arranged. That brought more comments than any other one thing we added. AND, you used it. You went to the Chart, looked down the list to find the item you wanted, clicked on it and skipped everything in between.

 

In building the new website, one of the first items on my list was easy navigation and that is what we got. Red Horizontal Menu across the top gave the basic sections and then you could chose from what is in the section. But we still needed to be able to look down a list and, at a glance, know right where you wanted to be.

 

We now have that. It is working but not finished. Of course, we never get finished with our website as we just keep adding more information.

 

Under "About Us", there were a couple of categories not in use so I asked Webmaster Len Librizzi to title one of them, Website Map. This month, I had a chance to get quietly started on it and I just kept working my way through.

 

Here are the ways to get there.
1. In the About Us (using the red menu), you will find a left vertical menu, and near the top it says Website Map.
2. You will also find in the lower right of the Home Page, next to Search, Go to Website Map.
3. http://webwhispers.org/about/purpose.asp is the web address (URL) and you might want to put it in your favorites.

 

I'll give you one example of finding something in the new website map. If you want to find something on "traveling" as a lary, scroll down, and the BLACK bars give you the same sections as the red horizontal menu. Find Library and read down to: How We Live and this is what you will find listed under that category, each one linked to the page:

 

Travel - Near and Far
Keep Active
Everyday Living
Pets
Local Support Groups
Laryngectomee Humor
Miscellaneous Hints

 

Have fun and make your navigation faster and easier.

 

New Volunteers

 

We have a new Volunteer to research hints and suggestions from our list mail for cutting, editing and placing in the Library. Vicki Metz recently retired, just as planned, and told us that as soon as she had some scheduled surgery and got that out of the way, she wanted to do some work with WebWhispers. We are delighted. Ed Chapman, as VP-WSI and I, as the one who worked the Library since it was called Hints, are working with her and I can assure you we are lucky to get this long time lary and RN. You will be seeing lots of additions, due to her work.

 

Her husband and caregiver, Gary Metz, has been working on his project with us for a couple of months, the new contents that you see at the top of each newsletter and he is doing a fine job. These contests will end up being a new Index but there is a lot of work to do yet.

 

Congratulations to both of them on their retirement and congratulations to us for having them here to help.

 

Enjoy,
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals [© 2008 Lisa Proper]

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S (LisaMProper@comcast.net)

 


Head and Neck Radiation and the Speech Pathologist


Part II: Coping Strategies for dealing with the side effects of radiation to the Head and Neck

Lisa M. Proper, MS CCC-SLP; BC-NCD; BRS-S

 

 

This is a continuation of the article posted in the December 2007 issue of Voice Points; please refer to that article for the introductory information to this article. As mentioned in the previous article, Speech Pathologists have an important role in helping patients dealing with head and neck radiation effects. Even if your facility does not have a program in which all head and neck radiation patients are seen by speech pathology, Speech Pathologists still see and treat patients who are undergoing or have undergone radiation treatment. Speech Pathologists need to be educated as to how to help these patients and this begins with adequate patient education.


The speech pathology intervention program, that I devised several years ago, includes providing the patients with a series of "Tips" or coping strategies for the various possible side effects of radiation. These tips are generally provided to patients before their radiation treatment began. This article will present these coping strategies or "tips". Please do recognize that these tips come from many sources including Radiation Oncologists; Otolaryngologists; Nurses; Speech Pathologists; Patients, etc. These are only suggestions and not all strategies will work for all patients. Additionally, Speech Pathologists should not provide such a list of suggestions without having the list approved by their Otolaryngology and/or Radiation Oncology team physicians.



Alterations in Taste


Alteration in taste may be one of the first noted symptoms of radiation in the case of nasal breathers. Although, these suggestions were developed for the nasal breather, many laryngectomized individuals, as well as other patients with taste problems, have been assisted with some of these coping strategies. Taste discrimination becomes increasingly compromised allowing for patient changes in taste perception of foods.

 

The taste of food may become unpleasant, salty and/or tasteless or bland. High protein food, such as meat, oftentimes takes on a bitter or a metallic taste. Dental problems will also negatively affect one's sense of taste. Coping strategies for taste alteration begins visually. Foods should be chosen that look appealing and, if one is able to smell, choose foods that smell good as well. Use varied types and ways of seasoning foods. Basil, oregano and rosemary appear to be particularly beneficial for flavor enhancement. Experiment with different amounts. It is extremely important to try a variety of foods.


In my experience, this tends to be the hardest thing to get patients to do, yet it is generally one of the best coping strategies. I encourage my patients to try foods that they previously did not like and, even more importantly, I ask my patients to try foods they have never tried before, as they will have no preconceived idea of what to expect in the taste. This seems to be an extremely successful coping strategy. Patients are encouraged to try low fat vegetarian recipes but with full fat ingredients and to add meat. This is due to low fat vegetarian recipes having an extreme amount of flavor from spices and other ingredients which are added because they have taken out the flavor from the meat. Even more importantly, these recipes have left out the main flavor enhancer to many foods, the fat. Use these recipes and add back the meat and/or fat and you have an even more intense flavor, which has more chance of being perceived when taste is compromised. Eating food slightly chilled or at room temperature enhances flavor. Why do you think we like leftover pizza for breakfast anyway? Smell is also enhanced at room temperature. Tart or sour foods are oftentimes perceived as having more taste. It may not be possible to use an extremely tart food due to the presence of stomatitis, however, something such as lemon curd or even lemon pudding versus pure citrus fruit may be perceived and therefore pleasant.


Unfortunately, those with more severe stomatitis may not be able to tolerate even small amounts of tartness. The use of increased doses of zinc is currently showing some promise in improving taste perception and should be discussed with radiation oncology team. As previously mentioned, meat, poultry and fish may become distasteful. Marinating these high protein foods may improve this. It has been suggested that marinating meat and other items in sweet fruit juices, wine, Italian dressing or sweet and sour sauce does the most for flavor enhancement. Another easy addition is using marmalade as a glaze, such as apricot marmalade on pork. Seasoning vegetables by cooking them in bacon, ham and/or onion is not only beneficial in improving taste perception but increases calorie consumption as well. It may be necessary to educate your patients as to alternate sources of protein such as the Peruvian grain quinoa; beans; fortified milk, or add eggs. The National Cancer Institute has a wonderful list on alternate sources of protein, that I routinely not only give my radiation patients but also my patients with chewing problems with any diagnosis. Associated with this list on the NCI website is also a list on how to increase calories. This list is also provided as a coping strategy as patients, who have reduced taste and/or pleasure while eating, as well as those with swallowing problems, reduce the amount of food they take. Patients with these problems need to get the "most bang for their buck" or, in this case, the "most calories/nutrition for their bite". Of course, a consult with a dietitian or nutritionist must also occur as, the dietitian will be able to provide specific nutritional needs to each individual patient's needs.


One additional word regarding taste perception, if nothing works and everything still tastes bland or bad; it is NOT an option for the patient not to eat or to solely rely on a feeding tube. (The placement of feeding tubes in patients without dysphagia during radiation treatment is a topic for another article.) Liquid supplements are extremely beneficial here. Educate the patient with the need to swallow as a prophylactic treatment for swallowing, as well as telling the patient to "just do it" or "get over the lack of taste and eat anyway for health's sake". This may be a necessary lecture for the noncompliant patient going through head and neck radiation treatment.


Dietary Management


As previous mentioned a pre-radiation dietary consult is a must and the dietitian should be a part of the radiation oncology team. Dietary management is obviously managed by dietitians; however, it is important that speech pathologists remind patients of these dietary recommendations and needs. Speech Pathologists see radiation patients on an ongoing basis where, in general, the dietary team may not. It is important that the speech pathologist and dietitian work together when developing recommendations. Patients should be reminded to maintain their daily caloric count and fluid intake, as recommended by the dietitian, and that daily weight recording is crucial. Patients are encouraged to eat in a healthy way before radiation and in the first few weeks during radiation before the side effects have a chance to become bothersome. Multiple small meals or snacks may be beneficial. Additionally, it may be extremely beneficial to make a morning meal the main or most nutritionally dense meal if radiation symptoms, such as pain or dysphagia, become worse throughout the day.


Pain management is also important in dietary management. The Speech Pathologist may need to speak with the patient's Radiation Oncologist for medication assistance in this area as well as providing other coping strategies which will be discussed later. Liquids are frequently easier to swallow for radiation patients and, therefore, liquid supplements are highly recommended when chewing becomes painful and or food becomes tasteless. Use of a supplement is not a cop-out. Their use should be encouraged, rather than allowing limited nutritional intake. There are several over-the-counter varieties of supplements ranging from 250 to 600 calories and some varieties provide as much as 29 grams of protein in just 8 ounces of liquids. Again, get the "most bang for your buck"! Use the aforementioned "How to increase calories" list available from the NCI to improve caloric intake. Another successful dietary management tool is to have the patient plan ahead. The patient should stock up on favorite easy to chew foods and have them prepared and ready to eat. This may mean making a batch of Mom's macaroni and cheese and freezing it in single servings for easy microwaving. Another coping strategy is to ask the patient what his/her favorite comfort food is (the food you can always eat even when you are sick) and having it readily available at a moment's notice. In general there are no hard and fast nutrition rules as everyone's circumstances are different.



Dental Health


Providing the patient tips for healthy teeth is another area which needs to be addressed. Most importantly, a pre-radiation consult with a dentist is an absolute must. The speech pathologist must encourage the patient to attend this consult as well as to follow though on recommended dental visits which will need to be more frequent due to radiation treatment and the increased risk for early tooth decay. The dentist should have provided the patient specific instructions for oral hygiene as well as fluoride gel. If these were not provided, the patient will need to contact the dentist to obtain them. (Although oral hygiene strategies may also be provided by other healthcare professionals, specific suggestions from the dentist would be beneficial). Generally, all patients need to use a topical fluoride gel at bedtime in addition to fluoride toothpaste. It is best to use a non-foaming fluoride paste. Tips for healthy teeth, however, truly relies on patient care regimen and begins with the need for gentle teeth brushing after all eating occurrences. If brushing after eating is not always possible, chew gum, which contains no sugar, directly after eating. Chewing gum will stimulate saliva and we know the important benefits from saliva (See part one). Additionally, chewing sugarless gum will assist in removing food debris when brushing is not possible. If brushing or chewing gum is not possible, immediately gargling or minimally rinsing with water will provide some assistance. However, nothing is a substitute for brushing. A soft toothbrush with a small head is recommended. A toothbrush designed for toddlers may be found less painful. It is more important to floss everyday during radiation than any other time in a one's life; even if there are only a few teeth.

 

Flossing also has other benefits which will be discussed in a later article. Salt and/or baking soda gargles provide significant assistance during radiation treatment, one of which promotes healthy teeth. This may be recommended as much as 4-6 times daily. One such recipe includes a quarter of a teaspoon of either salt and/or baking soda to four ounces of warm water. However, the specific recipe should be formulated by the oncology/otolaryngology team. Avoiding certain types of food will decrease the risk of tooth decay. Fermentable carbohydrates are the most destructive to dental health due to the fact that oral bacteria are very susceptible to being broken down into sugar. Examples of fermentable carbohydrates not only include all sugary foods and liquids, but even foods that are not considered "sugary" but are starchy or "sticky" foods such as bread, pasta, rice, potato chips, all of which are easily turned into sugar. If these foods or liquids are consumed, one should brush immediately after eating them.


Laryngeal Edema/Dysphonia


A discussion regarding the radiation effects to the larynx is also necessary. Alaryngeal speakers occasionally receive radiation treatment and they may also benefit from some of the same suggestions.


When the larynx is involved in radiation treatment, laryngeal edema and therefore, dysphonia, will occur. However, even if the larynx is not directly involved, laryngeal edema still may occur. Therefore, the patient must be educated to the fact that dysphonia or even aphonia is a possible side effect. Dysphonia may be in the form of breathiness, hoarseness, pitch abnormalities, etc. It is important to educate the patient to the fact that along with the dysphonic abnormalities, a reduction in vocal loudness usually occurs. This reduction in loudness is generally the most detrimental to activities of daily living, at least in the initial onset. This loudness reduction is particularly most bothersome to individuals who continue to work during radiation and to those who communicate with hearing impaired individuals. One area that can be addressed to assist reduced vocal loudness is to provide the education regarding voice amplifying devices. The patient needs to be instructed to increase the speaking volume on telephones. Many individual states provide voice amplified telephones for the "speech" impaired as a part of the state's TDD/TDY services. Stand alone voice amplifiers are readily available through many companies which can be found on the WebWhispers Supplier list. Many insurance companies, including Medicare will pay for a voice amplifier with a physician prescription. The speech pathologist should have a variety of these devices available for the patient to try. There are a number of devices available which range in size, decibel output, and microphone configuration. Many are even capable of amplifying aphonic voices.

 

Coping strategies include providing the patient with education regarding vocal hygiene and avoidance of vocally abusive behaviors. Throat clearing is particularly a common occurrence. If this occurs, the patient should be asked ask why he/she is throat clearing and then should be specifically educated with regards to pharyngeal and laryngeal anatomy and physiology with regards to voice; throat clearing, secretion management as well as perception. The patient should then always be given a substitution strategy for the throat clear. A clear patient understanding of the underlying mechanism of why and how is absolutely necessary to reduce the habitual pattern of throat clearing. A "no-no" list is not helpful or successful. Patients should be educated to speak at a volume that is comfortable and that they can use without increased effort. It is important that they use the "voice that comes out" and not to compensate in any manner to make it better without specific evaluation and training. Vocal conservation may be beneficial with these patients, especially those with vocally abusive speaking patterns that will not be overcome in the course of radiation treatment.


Oral/Pharyngeal Dryness


Coping strategies for dry mouth are probably the most appreciated tips that we provide patients. Although these are meant for patients who are currently going through radiation treatment or have just finished radiation treatment, do not hesitate to give any of these suggestions to patients who finished radiation treatment years ago. There just may be a suggestion that they haven't tried that will work for them. This has happened several times in my practice. The good news about dry mouth coping strategies are that there are many of them; the bad news is that it may take the patients longer to find some particular ones that work for them. Encouragement to continue trying the different strategies is often necessary.

 

Patients experiencing dry mouth should be encouraged to sip water or, if unable to swallow, to suck on ice chips throughout the day. A small water bottle should be carried with the patient when away from home. Additionally, a glass or a bottle of water should be kept in sight while in the home. If the water is visible, it will be more readily consumed. Patients who cannot swallow liquids are provided with a small fine mist bottle that can be filled with water and used as desired. The use of sugarless drinks should be used frequently during meals. With all the use of liquids, one must be cautioned to avoid excess water as excess water can reduce the oral mucosal as well as decrease calorie intake. Caffeine and alcohol should be avoided as they have drying properties or increase the sensation of dryness. One should avoid frequent use of acidic beverages such as most carbonated and sports replenishment drinks. If tobacco has not already been eliminated, its elimination now is crucial to oral health. Using a humidifier, not only at night but during the day can be beneficial. Mouth breathing and/or holding the mouth open in a resting position while awake should be avoided and if necessary. Speech pathology training in this area can prove beneficial.

 

Meal time can be improved by spraying the dry consistency food with flavored "good for you" oil, such as olive oil, walnut oil, etc. Drinking a few swallows of "oily" broth prior to and/or during meals may be assistive. Lips may become dry and cracked when the mouth is dry. These symptoms may be improved by the use of ointments containing vitamin-E or by a commercially available oil-based balm or lipstick. Swallowing pills may be difficult due to dry mouth. The patient should be provided with the similar suggestions given to all patients with this difficulty. Medications may also be problematic to dry mouth if they list dry mouth as one of its side effects. Commonly used medications which cause dryness include but are not limited to: Various pain medications, decongestants and antihistamines, diuretics, antidepressants, antipsychotic medicines, antihypertensive drugs as well as any drugs with anticholinergeric properties. The patient should ask their physician(s) if any of their prescription medications may contribute to dry mouth. Any medication that may contribute should be substituted or discontinued if possible, even if just for a short time. When purchasing or using an over the counter medication, the radiation oncology team should be consulted. Lemon glycerin swabs are commonly used for oral hygiene but should not be used in the case of radiation induced dry mouth.


In addition to general coping strategies for dry mouth, another strategy is to attempt to improve increased salivary flow. Chewing sugarless gum or sucking on hard sugarless candies may increase saliva flow. Citrus, cinnamon and mint flavors have been found the most beneficial in increasing salivary flow, however, citrus use may cause pain in patients with stomatitis and mint, especially peppermint should not be used by patients with gastroesophageal disease. When choosing a sugar substitution, the choice of Xylitol has been shown to help to actually prevent tooth decay. Increase salivary flow has also been noted to occur with the use of not only citrus products but any tart or sour product such as dill or sour pickles; sauerkraut and other pickled food. Tufts University demonstrated that patients who sucked on a cherry or a prune pit also improved salivary flow.

 

Very sweet foods also improve salivary flow but are not recommended due to their ill-effects on dental health. Various spices have also noted possible improvement, however, the data is inconsistent and patients should be educated to be on the look out for any spices that may assist them individually. Chewing on paraffin and even rubber bands have also been proven to improve salivary flow, although I doubt that either of these are very appealing - unless you can still find those wax lips we chewed on as kids. There is also commercially available inert sugar free gum which has been reported to work better than regular sugarless gum although the difference is questionable. Samples of these products should be provided to patients in order for them to choose which works better for them. There are many over-the-counter saliva substitutes available. The effects are only temporary but patients do find them helpful to use in specific circumstances. There are also prescription medications which improve salivary flow. The patient should be encouraged to ask their physician to determine if there is a medication that may assist as no medication is suitable for everyone. Additionally, these medications are not without side effects.


Another coping strategy for dry mouth is to reduce saliva viscosity or in other words: thin the saliva. Saliva viscosity is thinned with overall improved hydration. Many of the general coping strategies listed above due also assist to thin saliva viscosity. For example, the salt/ baking soda gargle used four times a day has been reported to thin saliva. Sipping on oily broths not only before a meal but throughout the day may assist. The use of popsicles, smoothies, and blenderized fruit and vegetable drinks (sugar free of course) may help. Papase or meat tenderizer has also been noted to aid thinning saliva viscosity. But its use is currently under debate and should not be suggested to a patient without specific discussion with the patient's physician. The use of dairy products should not be discouraged due to their high nutritional value and easy to swallow consistencies. Dairy products do not increase mucous, however, they do easily coat the mucosal linings, making one perceive increased mucous or mucous viscosity. This coating can generally be eliminating by drinking a non dairy product directly after consuming dairy products. An acidic product appears the most beneficial if stomatitis or dental problems are not present.


Mouth/Throat Soreness


Although we provide strategies to prevent soreness, unfortunately soreness does occur. It is generally a result of extreme dryness or stomatitis. It must be stressed to the patient that mouth soreness needs to be reported immediately to their medical team. The physician can diagnosis the cause of the soreness, and in the case of stomatitis, recommended a prescriptive numbing mouthwash or spray as well as other types of medications. It may be necessary to schedule the use of these numbing agents with eating and/or exercise. Coping strategies for soreness include an increase in the use of the salt and baking soda gargle to every two hours while awake and especially after meals and before bed. If the salt and baking soda combination is irritating, the use of baking soda alone as a gargle should not be irritating and could provide some relief. If soreness reduces the ability to chew, food textures may need to be altered. The use of a moist mechanical soft type diet consistency may be beneficial. Or minimally the patient should try to avoid sharp edged food, sticky food as well as dry, flaky, crunchy and stringy food. Patients are encouraged to take a trip to the grocery store and to go up and down every aisle, looking at everything on the shelf but thinking about the food in terms of texture. (Something only "Swallowologists do".) Cooking techniques can make food easier to chew and/or swallow. The "Easy to Chew and Easy to Swallow Cookbook" by Weihoffen, Robbins and Sullivan provides excellent cooking strategies with good to excellent tasting recipes that are "normal" foods. (In other words, no "spaghetti in a glass" recipe here.)

 

Pain during eating may also be reduced by taking small bites or using small utensils, chewing well as well as eating several mini meals versus 2 or 3 large meals. Temperature awareness of foods and liquids is necessary in order to avoid pain caused by either extreme. If pain during chewing is so severe and cannot be managed, the patient may need to rely on liquid diet with complete nutritional formulas. Patients with mouth soreness should not use over the counter mouthwashes, toothpaste or lozenges unless approved by their physician. Cleaning the gums and teeth with a cotton swab and a mixture of hydrogen peroxide and water, is frequently recommended. The specific ratio and frequency of use of this mixture should be discussed with your specific medical team. A discussion should also occur regarding the phenomenon of "the anticipation of pain contributes to the problem of pain". Instead, educate the patient to remember all the steps they have taken to reduce the pain as well as discuss the effect of physical tension that occurs when one anticipates pain. Patients find this a great help.


Providing the patient with a variety of suggestions which may assist throughout radiation treatment to the head and neck will hopefully reduce the negative symptoms of treatment and provide a more healthy and active lifestyle, not only during treatment but after treatment as well. Future installments of this article will discuss specific therapeutic treatment strategies.

 

 

 

 

 

Rosalie Macrae just wants her identity back....

 

 

When it was suggested by an old British newspaper friend who edits a journalists' blog journal that I write a piece about how it felt losing all my cuttings- called [newspaper] clippings in the US-- thousands of them m'lud, after carelessly and irrevocably chucking out the wrong things when moving house, I felt a bit like poor Mrs Lincoln when that hack asked her how she'd liked the play after Abe was mown down in the theatre.

 

There is a sort of analogy with the cuttings and the larynx. So I said that, and under the above headline, and explaining about throat cancer and being a lary, wrote:

 

"The play 'Our American Cousin'------ (hands up all who knew that!) would be my binned, lost, mourned cuttings.

And the monumental American president Abe would have to be my binned, lost, mourned voice.

 

They were both, and continue to be, traumatic events in my life.

 

At least I have the memory of my voice on my answerphone, made on the eve of the voice amputation. Let the phone ring out on a pre-arranged date and you will hear the old Rosalie, if you know me. And there is a long, self-indulgent Celtic streel which I taped on the same day about my previous, unbelievably happy newspaper life, comparing my bad luck, modesty never having been an occupational problem, to stricken voiceless ones like Ed McBain, Jack Hawkins and other well-known laryngectomees.

 

In the two years since the amputation my self-confidence has gradually returned. I have stopped avoiding speaking to strangers; when they stare, and why not, at this unexpected voice asking for advice on Touche Eclat and some free samples please, I practice my Buddhist-y arts, smile gently (must remember do this in front of the cruellest mirror in case it makes me look soft) and say I want to look as pretty as possible to compensate for the EL. That usually works and we get on with the beauty and a bigger than average goody bag.

 

The telephone is difficult for freelance interviews, as the voice sounds really weird until you know it. British bank people are the worst on the phone, this not being included in the charges. They hang up. But in call centres overseas it is heaven, the EL being perceived as a new kind of customer local accent. Or they tell each other that more aliens have landed in Britain, worse than the royals. Solicitors are the best, and persevere to chat because they add that to the bills as the platinum second hand moves round on their Vacherons.

 

The thing is, I cannot easily separate losing my cuttings from losing my voice. If the proverbial angel gave me the choice of which to have back of course it would have to be the voice so that I could cry again, and laugh, and sing Cherry Ripe to horrify my grandchildren as I did their parents, first thing in the morning. And tell someone they are loved by me. The EL doesn't do gently-husky. But most of the best lost cuttings got into my newspaper because of the voice. It was quite a nice, soft, sincere, Scottish voice which would have made Kirsty Wark--a well-known Scotish presenter-- sound even more like a henwife.

 

Everybody, as the poet Mliton said, has one true talent 'which is death to hide'. He mourned on writing a poem about his blindness, that his own talent was now 'lodged in him useless.' No I did not compare myself to John Milton; although his wonderful poem Paradise Lost was in the back of my mind. Never to be Regained. Like the twin pome. But could be remembered in these, to me, priceless cuttings. To others, they were just wrapping for fish and chips.

 

This late voice of mine, gift of an Invernessian father, opened so many doors. I remember being pushed into gangster Jack Spot's hideout in London's Paddington because one of Fleet Street's finest thought this mobster, extortioner, Mafia mate, might talk to a naive 19-year-old. He didn't. But his Irish girlfriend Maureen gave me their home telephone number for later. She got lonely when her Jack was 'out', liked my voice and I reminded her of her sister. She reminded me of mine, and we gave each other a sudden spontaneous hug I remember, in the shag-piled awful golden hall until Spot called her in. We wondered what on earth we were doing there so far from our heathery bogs! Both wanted excitement in our different ways I suppose.

 

I made the infatuated decision to share this number with a Clooney-esque Communist called Lew Gardner of thre Morning Star because I thought being an intellectual Trotskyist he wouldn't want a human interest story unless it had a political connection. I'd forgotten that they would say Mr. Spot was a typical heartless product of the capitalist system. And worse, the secret number in huge black Gothic font was plastered over their front page the next day. Lew never did take me out for lunch as he had a lovely comrade called Merry who also looked like Simone Signoret. Oh no. Memories of another lost cutting.

 

I interviewed Signoret on the Ile de la Cite in Paris while husband Yves Montand rushed around making us Irish coffees--very much the contrite husband after the Marilyn business-- but made them with the Scottish liqueur Drambuie, in my honour because of my 'jolie p'tite accent'. The voice.

 

That's what I mean about the cuttings and the voice being inseparable. Most voices are pretty priceless in journalism. People still talk of the hush in the Daily Mail newsroom when an Australian reporter, Lawrie Turner, who disdained going out with cold British girls for Swiss aow pez, (au pairs), managed to get through to Tibet when the Chinese invaded. A telephone link event back in the Fifties.

 

'Is thet tha Dai-lie Lemah? This is tha Dai-lie Mayel. G'dye t'ya sir!'

 

It was a great interview to tell them over cold lagah in Earls Court, the part of London they still call Kangaroo Valley because of the large Oz population. Lawrie was seldom seen in our local Fleet Street pubs because of the warm beer. For some reason the US journos from United Press and Reuter didn't mind the beer and liked British girls. But I digress.

 

I hadn't bothered too much about losing the boxes of cuttings--I would do something about it tomorrow kind of thing-- until I lost my voice. When I came home after the operation, left to think properly on my own, after months staying with family and friends, it hit me like a double bereavement. A double loss of identity. A happening beyond tears which I can't shed now anyway. I have mainly stopped brooding about cruel fate. I try to concentrate on what I can say, as well as I can. Keeping my weight up to seven stones. Surviving.

 

I have done a little bit of cuttings research. The Daily Express couldn't help. Theirs were my favourite cuttings. I couldn't ring them because of my EL and couldn't get the pathos over in my letter to proprietor Richard Desmond. His assistant said they weren't databased. The British Newspaper Library hadn't anything filed under anyone's byelines and they would have to be searched through endless microfiches. My daughter, a busy journalist herself, has so far gone through about six months starting in 1956. She found some really dated ones which made me cringe, like Princess Anne's first foreign tour to visit the graves of Plantaganet queens in the Loire Valley in France. That was a voice memory too because I had to implore the genuinely awful Normandy proprietor of the Press pack hotel to let us make transfer charge calls. That was when we found a black mophead and put it in a photographer's bed and told him the barmaid was waiting for him with the lights out.

 

I've advertised in our trade paper, Press Gazette for researchers to go through the files, but couldn't afford to pay for the months it would take them. I've found the occasional funny ones online, and in old cupboards, like an interview with Vladimir Nabokov when he couldn't remember what the four knots in the hankie on his head were to remind him of, and he took me and his wife butterfly hunting instead on the marshes at the back of Nice. Pravda used that.

 

Features in obscure £25-a-thousand word antique magazines appear in drawers, memories about the Munich Manchester United air crash in 1958 for my sports journalist son-in-law. Another voice one. They sent me because I spoke German; stories about the bailiffs coming to call and taking away my 1750 grandfather clock when I was in a state with my marriage breaking up; a story in the Daily Mail about a local Essex lad who was making beautiful walking sticks carved from wood he found in his walks. David English, the then editor spiked it at the last edition because it showed the out-ot-work having enjoyment. Which would never do would it.... But he at least sent me the cutting page along with the cheque.

 

But most of the cuttings have gone. When I organise things properly I might get up to the Newspaper Library with a posse of friends and do some more searches. My heart will not be in it though. The blurred A4 copies will never be the same as touching the paper on the next day, and tearing it out, or having the news editor's nice secretary keeping it for me.

 

The best stories, voice interviews, voice highlights, are the ones which never actually made it to become a cutting. I remember when I finally managed to interview a fragile Edith Piaf. She held my hand and led the way to her music room overlooking the Bois de Boulogne and she said she would sing her new song spcially for me instead of speaking, as she liked the way I spoke her beloved Parisian argot. Her huge, protective Greek boyfriend played the piano while she sang for me and the photographer, 'Je Ne Regrette Rien'. No I Have No Regrets. It was released about three months later to worldwide acclaim. As big as My Way. The hair on my Jackie Kennedy bob tingled as she sang. But the Foreign Editor deemed it 'too Paris parochial' and instead used a terrible story I'd chucked to the gossip pages about some British strip dancers going to Paris for a swap at the Folies Bergere.

 

I might even start a resuscitated cuttings book tomorrow. I will start off with this one. I might even pluck up the courage to listen to my last taped interview for the BBC with some refugees from Idi Amin. Maybe tomorrow. Or, as the Irish say, the day after that.

 

 

 

 

 

Don't Block My Blessing by Not Leaning on Me

by Vicki Eorio

 

 

I received a message recently that was excellent. The subject was letting caregivers and others help us when we need it because they need to do it. Pat wrote it and the point is well worth reviewing and expanding. I personally need to take it to heart and actualize it.

 

Pat wrote, "People, for the most part, like to help others. It is automatic to stop and do something when someone needs help. People don't do it for praise, although they may get that. They do it because it is the RIGHT thing to do and it leaves them feeling better about themselves. I have known some people who were so stubborn; they wouldn't let anyone do things for them when they really needed it. I sometimes tell them that they are depriving the other person of feeling good about themselves.

 

Being a control freak is at times a blessing and other times a personality defect. I am working hard on being appropriate with my control tendencies, much to the relief of my husband and therapists. Since I tend to think my way is the best way, the patience these folks have exhibited is remarkable. And, surprisingly, they still seem to like me! Or they are the best actors in the world. Either way, I am so grateful.

 

The physical limitations from the stroke were another life lesson, similar to having survived cancer and becoming a lary. There were emotional limitations as I adjusted to a new body, problems communicating, problems eating, changes in body image, relationship changes, and even more, as we all know. Some, we could control by working very hard to compensate, some of us took prescriptions for anxiety, and I believe all of us went through an examination of conscience regardless of our physical challenges. We had to adjust and accept our new life style, realizing it affects those around us, most importantly our caregivers.

 

I have written about accepting the need to control my controlling nature but don't necessarily practice it. It is probably complicated by the effects of the stroke and the fear of not being able to work again. Control of my environment is easier but not of my head. I have become a professional worrier...how is Frank doing? Will he get tired of being a caretaker? Will the drought end? Can I negotiate with the IRS? Will SS accept my application? How long will my disability checks last? Can I do volunteer work while I am on disability? How do I communicate with my caregivers without sounding like a whinnying old lady? When can I drive? When can I take a walk?

 

I don't know what religions my readers are but I do believe in God. I trust that while He may leave me alone for awhile, He is always there. It is not like He doesn't have far more important things to do or I am not aware of his oversight but, when I need it, he gives me a nudge to jolt me out of self-absorption and jam everything into perspective.

 

Regardless of the cause, many of us have experienced some variation of what happened to us here this week. That is why my heart and prayers go out to Judy "Hear me Roar" and her fighting for her husband. Our situation turned out not to be as serious as hers but in the beginning, just as frightening.

 

Monday night I was loading the dishwasher and heard a tremendous crash. Frank had passed out and hit the floor without breaking his fall. I couldn't move him, did turn his head in case he vomited because we just finished dinner and then tried to get him to sit on the floor with his back against the wall, again in case he vomited, he would not aspirate. Called 911. The operator was wonderful. Of course, I believed nothing she said. Finally, the EMS arrived and they were wonderful. I rode with them and my husband, scared to death.

 

Frank was in ER for hours with a preliminary of a heart arrhythmia which may require a pacemaker.

 

Now comes the kindness of strangers. ER nurses would not let me go home in a cab. The security guard, with a nurse, drove me home. They called me about 30 minutes later to see if I was ok and to give me an update on Frank.

 

Somehow our nosy but kind 83-year-old neighbor not only found out Frank was hospitalized, but that he was in ICU. My neighbor can't drive, neither can I, and I was pacing trying to figure out something when she called and had arranged for Jack, a neighbor (whom I had never even seen!), to drive me to and pick me up from the hospital. Same thing for the next day and same thing to bring Frank home. Unbelievable.

 

Then Jack took Frank to the doctor, to get scripts, and some groceries.

 

The next day another neighbor took Frank back to the doctor and to the therapist, where I go, and who now will treat Frank for his shoulder.

 

And then, yet again, someone I didn't know called to say they had heard I had a serious doctor's visit next Tuesday and, again, they will take us and pick us up.

 

Garbage cans were put back in place after a storm, someone offered to blow leaves off the driveway. They took Frank to get gas in the car. It seemed as if it never stopped! I, of course, would say, "No, that is ok, it can wait." They didn't listen.

 

I gave up control because I had to. Didn't have the skills and was not in good physical or emotional shape. Most of it was a relief because Frank was in the hands of professionals in the hospital and all of a sudden I found myself surrounded by caring generous people.

 

Now I have him home and am so grateful that my control meter is much lower.

 

So I have found myself recently both as a patient and a caregiver. Neither are easy and I found this applies to both roles:

 

Don't Block My Blessing by Not Leaning on Me.

 

 

 

 

 

MOVING ON

 

 

When I first started using my trusty Servox (a loaner from a lovely SLP named Eva) it was after three difficult years of treatments, procedures and complications that left me with fewer and fewer options and, increasingly, weeks and even months with no voice at all. I was thrilled with my new reliable and easy voice, as were my friends and family. I became reasonably proficient almost immediately and blabbed so much they ALL threatened to take away my batteries at one time or another.

 

I had fun practicing and it was a huge relief to be able to use the phone again. Alas, the novelty wore off and I began to find fault with my new BFF (best friend forever). I had issues, as they say. I became self-conscious. I discovered just how difficult it is to either whisper or yell. People find it surprisingly easy to just talk over you or ignore you. I developed "Servox elbow" and grew tired of this unflattering accessory. I missed the variable intonations and subtleties of my old voice. I missed being able to tell stories and jokes with my trademark ability to mimic voices and accents. I have since learned that accents come through loud and clear. My Connecticut friends always teased me about my Maine accent and say it is still unmistakably there. In fact, some voices are even better now. I discovered a while back I can do an amazing Munchkin voice using the high tone and tightening my mouth to constrict the sound even further. I just tried it again and while I find it hilarious, the kitties are extremely skeptical. Right now, both are staring at me with that slit-eyed scrutiny known to cat lovers everywhere. It's a great ice-breaker for kids and uptight adults, though. I also do a very convincing "Arnold" with the low tone on loud. "I'll be Baack" gets them every time.

 

Still there were some bad times. Early on, one night I got a wrong number and the kids who were calling their friend were convinced it was him but that he just had some weird voice altering machine so they kept calling back. I should have just turned off the phone but I was mad and hurt after I explained politely several times they did indeed have the wrong number. I finally lashed out, "Stop calling me, you little @#$%. I have had cancer and this IS my voice." A while later, the phone rang again and I picked up, expecting a call from my son (it was before I had caller ID) and it was one of them! Before he got two words out, I exploded with another expletive deleted and as I started to slam down the receiver, I heard him say, "No, wait. We're...." I realized belatedly that the tone of his voice was contrite and I have always hoped that perhaps those kids learned something that night. However, at the time, I was badly shaken. I felt alone and vulnerable and afraid. It is terrifying and humiliating to be teased by a group of strangers for something you have no control over.

 

Thankfully, that experience has never been repeated. I have had one or two people hang up the phone when they call me because they think they got an answering machine (quite useful, actually with bill collectors HAH!). And one time, some poor addled fellow at Staples actually backed away in shock when I asked for help finding some part for my printer. I daresay that he does not have a future in sales!

 

Other than that, it has been all good. Like this past Sunday. I was shopping for lighting fixtures at the local big box home improvement store and feeling a bit flummoxed by my choices. Next to me were a lovely young mother and her two exuberant daughters. The elder was about 8 years old, I suspect and was clearly relishing her role as the older and better behaved big sister. The younger was maybe 4 and she was a handful. Her name was Maddie. I know that because I heard it repeatedly, as in " Maddie, come here." Maddie, stay with me." "Maddie, not so loud". I got a kick out of the girls and smiled understandingly at their mother when they nearly careened into me the first time. The second time, as they sheepishly screeched to a halt next to me, I gave them a conspiratorial wink and they grinned back.

 

Just then, a salesman happened by and I asked him a question. He was very attentive, but as we got into the conversation, it was apparent he was having a hard time understanding me. He handled it graciously, stopping me and saying, " I apologize, but I am a bit hard of hearing and am having some difficulty understanding you." I switched to my low tone and turned up the volume slightly. "Is this better? I asked. "Much", he replied and we finished up after a bit of rummaging around boxes and reading directions. As I left that department, I thanked him and he said "Boy, that thing is really something else. It's surprisingly clear... quite a piece of technology, isn't it?' I agreed. "It's a godsend." The girls were watching wide-eyed the whole time. Although when I caught their eyes, the older one managed a smile before she looked away and grabbed her sister. I could hear the rebuke sotto voce, "It's not polite to stare."

 

The girls and I played cat and mouse that wintry afternoon as we wandered the aisles scoping out deals and searching for inspiration. They would spy me and we would wave and then their admirably even-tempered Mom would head over to appliances while I checked out flooring. Finally Maddie could stand it no longer. One time as I rounded a corner, she saw me from afar and crowed, "Hey, Lady...there she is...Hey Lady." I turned around and as I came nearer, I could see that Mom was bemused and big Sis was embarrassed. "You girls are a couple of spitfires", I said as I nodded at their Mom, "I bet you keep her real busy". I told her she had a lovely family and after introductions, "I'm Madison and this is Sydney." Sydney introduced her mother, a nice touch, I thought, and I said, "Pleased to meet you ladies, my name is Donna." There was an expectant pause so I leaned over to Maddie and said, "I have a funny voice, don't I? I think it makes me sound like a lady robot." As Maddie gave that some thought, Sydney shook her head, as if to say, politely, "Oh no, I think you sound just fine."

 

I went on to explain that something had happened to my throat and I couldn't talk, so my Servox helped. Their mother was great, trying to help the girls understand why I used it and then the questions started. I explained it was like a microphone and without it you couldn't hear me and Sydney said she had met someone else who used something like that. We had quite a lively discussion and I heard about Gramma and baby brother Hunter at home with Dad. Eventually, their mother and I tried to break up the traffic jam we had caused and I gave Maddie one more demonstration before heading out, but she wasn't quite through. As they rolled away, she craned her head back and hollered " Wait...what do you do at night?" I laughed, "Put in on a table, right next to my bed, Maddie...it's great at scaring away monsters!" There was a gasp and then "Lady, how...?" At that both Sydney and Mom said, "Enough, Maddie," and I had to agree. I came home in a great mood.

 

Rosalie writes movingly this month about identity and how our voice is so much a part of who we are...and were. It is not easy being forced to reinvent ourselves this way. For some of us this is a grievous task; others rally remarkably well. Most of make this journey in fits and starts. In the nearly four years since that first memorable encounter in my SLP's office, I have pretty much made my peace with the little buzzer. I still avoid the phone, but to be honest, that may have more to do with my habitual procrastination than my Servox voice. I miss my old voice, sometimes painfully, but then I miss my youthfully svelte figure and skin that fit, too! Lost money, lost loves, lost jobs, lost looks and voices....life is like that. When we look at it that way, it's amazing we can carry on at all. But we do because there are founds as well. New jobs and new loves. New focus, new cause. New appreciation for gray hair and wrinkles as well earned medals for battles hard won. For new voices that inspire handsome men in airports to strike up conversations and for little girls who call out gaily, "Hey Laaady...Hi!"

 

 

 

 

 

Overcoming Myths

 

 

It is a practical matter for relatives, friends, and even some professionals to share their knowledge and understanding of what laryngectomees are no longer able to do. They honestly believe what they've been told, or deem reasonable, and pass it on as gospel.

 

I puzzled over what to call this article. At club meetings, or at mealtime, discussions often include specific things folks assume we can no longer do. We refer to this as "destroying the myths", or "myth busting"...say that three times. I prefer "overcoming myths" because it denotes some action must be taken on our own to discover what we can do with what is left after surgery and treatment.

 

After we see the doctors and medical professionals we return home. We begin to convey to family and friends what we will undertake during our rehabilitation phases.

 

Personally, I was shocked by what my mother had to say. She was crying while we spoke on the phone prior to my laryngectomy. My uncle told her "he had a friend who had the same operation. This friend talked just fine out of the hole in his neck". As the family patriarch, Mom believed every word Uncle Harold said. She was upset over the thought of a permanent hole in her daughter's neck. Cancer was not a word she used then. As parents we can understand how it feels when our babies are harmed. Thank goodness I had received excellent pre-op counseling and could put her mind at rest.

 

I was able to explain to Mom that my uncle failed to understand that to speak we all must use teeth, tongue and lips. The voice he heard came from his friend's mouth not the hole in his neck, and I planned to develop the same technique he used to generate tone by vibrating the walls of my esophagus. However, it still baffles me when I run into the perception that laryngectomy means that everything above where the larynx sat no longer functions. When you realize just how little we are understood by the public, and even some medical personnel, it is easy to understand why so many assume that we cannot taste, hiccup, smell, sneeze, hum or blow air from our mouths.

 

The quickest myth buster I know of was taught to me early on at a Rehab Seminar. Many SLPs use this with new laryngectomees. It is the "match trick" and is best used before they can buy into the belief that they cannot smell or blow, but I've seen it convince some non-believers too. Strike a match. They can smell the sulfur as the heat rises in front of them. Next they can learn to blow the match out using mouth air only...not as they would with lung air pre-operatively, which now causes stoma blasting. Useful lessons.

 

The next step is to blow out a candle a little further away from their mouth. Soon it will be possible to move air within the oral cavity at will to sniff, smell and blow. It does take baby steps while healing. When the swelling is reduced we learn to control our tongue thrust to move the air in our mouths. It is possible to blow up a bubble gum, and balloons with mouth air.

 

Note: Odd, as it seems now, I couldn't blow up a balloon before I became a laryngectomee. I didn't know the secret of drawing air up through your nose and into your mouth before depositing it into the balloon neck. I mastered that technique at a Voice Institute outing a long time ago.

 

You know you've really got the technique down pat when you can enter a "watermelon seed spitting contest" at a Laryngectomee Club picnic. There are varying degrees of difficulty if you measure the distance away from the trashcan. It can be done if you can stop laughing long enough to spit the seed out far enough. Practice makes perfect.

 

I discovered it is possible for a laryngectomee to develop enough control and strength to return to playing a favorite wind instrument. A student of mine finally shared how much he missed playing his horn. I asked if he had tried to get sound on it post op? The next appointment he smiled broadly as he began to proudly demonstrate what he had discovered he was able to play. Some use mouth air, and others have devised other means using lung air. We've heard them play at past IAL Annual Meeting Fun Shows.

 

Can't sing? We always have a Sing-A-Long at the Annual Meetings. In the past we have even written our own lyrics about the city we met in, and sang it in the round. We had the "EL Singers, "ES Singers", and "Blom Singers" (pun intended). What fun!

 

Liz Redmond (UK) recently posted this on WW. "I have the greatest respect for our professionals, but sometimes with the things that cannot hurt us if we try it - we need to "just go for it". I was told that there would be a number of things I wouldn't be able to do; a lot of them I have successfully re-mastered in a different way. One of them is singing. Now I often joke that I have a better singing voice post op and that's the TRUTH! Regardless, my grandchildren love Nana singing them nursery songs etc, and I sang my head off after dinner on Christmas Day!!

 

One of the funniest things I've heard at a laryngectomee support group is this statement from the president's spouse, "laryngectomees cannot eat popcorn!" It still makes me laugh. This particular club served a potluck lunch during their Saturday meetings. The very next meeting I took a huge bowl of popcorn to share. Almost everyone took some to munch on before the lunch break. The spouse was flabbergasted. Turned out her husband couldn't eat popcorn because he had no teeth. She assumed all us couldn't swallow anything as rough as popcorn. Another myth bites the dust.

 

It may not be polite to talk with your mouth full, but we all do at times when we are engaged in table conversation. Some laryngectomees declare they cannot talk while they eat. Some of us politely manage to park a small bite to the side for a "word or two". Swallowing and talking at the same time for ES and TEP speakers doesn't work very well at all. I wonder sometimes if the silent laryngectomee ever tried to talk at the table during the meal, or perhaps something else is going on. It is a social thing to do at mealtime.

 

Let's see what else is on the myth list: Cannot bathe or shower, shampoo our own hair, fish, boat, or swim, lift heavy loads, run marathons, ski, have sex, strain for a bowel movement or deliver babies naturally, speak all day, or return to the working world in the same job, or a new one? Thankfully, none of the above myths are true. Some folks are surprised to learn that not all laryngectomees are sent home with a bevy of equipment like suction machines and humidifiers, or that very few of us use shower collars after trying them.

 

We have self help support groups ready to help us with important hints that help resolve our "how to" questions. As Liz noted, "[It was necessary]to re-master how to do some things." It was especially important to me to finally meet other female laryngectomees, just so I could observe how they managed to take care of themselves personally and in public. By observing others laryngectomees I also learned that dapper men can find dress shirt collars that fit, what sort of ties worked well, and how they had worked out techniques for getting to their stoma quickly in public if necessary. The fellows in my local club appreciated hearing that part of my report so much I included it in my article on fashion in "Self Help for the Laryngectomee". I am so thankful for the volunteers that hung around to give me a hand up. In honor of my mentors I am still gladly paying that debt forward.

 

Fortunately, the assumption of laryngectomees becoming depressed as a result of the surgery is only another myth. New laryngectomees are still not told the laryngectomy often includes the surgical removal of a portion of the thyroid. Radiation will probably affect thyroid function of the remaining lobe eventually. This becomes hypo-thyroidism and it does have an impact on a number of items that turn up on the "myth list". Like the "popcorn" story, not all laryngectomees suffer from agitation, confusion, constipation, fatigue, lethargy, loss of libido, hair loss, weight gain, and so on. Each one of us has our own set of conditions we need to learn to handle. Seeking the help from a doctor of Internal Medicine, especially an Endocrinologist, is the best way to get your body's seven systems functioning in balance. A simple blood test is necessary, but the interpretation of the test results can make all the difference in our daily lives. It is a mistake to accept these symptoms as part of being a laryngectomee. My friend Liz has it right, "sometimes we need to 'just go for it'".

 

Elizabeth Finchem,

Tucson, AZ

 

 

 


 

Can you read this?

 

i cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it dseno't mtaetr in waht oerdr the ltteres in a wrod are, the olny iproamtnt tihng is taht the frsit and lsat ltteer be in the rghit pclae. The rset can be a taotl mses and you can sitll raed it whotuit a pboerlm. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Azanmig huh? yaeh and I awlyas tghuhot slpeling was ipmorantt!

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 37 new members who joined us during January 2008:

 

Claudette Armon
West Allis, WI

Cheryl Behan - (Caregiver)
New Concord, KY

Gary D. Burns
Greenville, SC

     

Gerd de Cecco
Rustenburg, South Africa

Tenya Combs - (Caregiver)
Lawerenceburg, KY

Billy Crea
Ellwood City, PA

     

David James Crosby
Reading, PA

Marva Irvine-David-(Caregiver)
Temecula, CA

Richard David
Temecula, CA

     

Julie Deleemans
Ontario, Canada

Donald L. Dickerson
Medina, TX

Belinda J. Elmore
Mt. Airy, NC

     

Angela C. Ganther
Singer Island, FL

Bill Goodman
Republic, WA

Amber Dawn Halliwell - (Caregiver)
Springfield, MO

     

Grover Hart
Cropwell, AL

R. Dean Hayes - (Caregiver)
Covington, GA

Leon D. Henderson
Millsap, TX

     

Ellen Higgins - (Caregiver)
Grand Blanc, MI

Ed Higgins
Grand Blanc, MI

Brenda C. Hupp
Safety Harbor, FL

     

Gerald R. Kaufman
Camby, IN

Gayem Koprucu - (SLP)
Istanbul, Turkey

Mary Lewis - (Caregiver)
Co Antrim, N. Ireland

     

Peter Lewis
Co Antrim, N. Ireland

Melinda Marashi - (SLP)
Knoxville, TN

Christine Buth Martin - (SLP)
Evanston, IL

     

Linda H. McCauley - (SLP)
Parkersburg, WV

Rita Moorehouse
Abilene, TX

Bonnie S. Muncey
Virginia Beach, VA

     
Eric Lee Overton
Speedwell, TN
Beatrino D. Richardson
Sequim, WA
David Schurr
Port Charlotte, FL
     
Dustin Silva
Vancouver, WA
Lois Ann Tague
Drexel Hill, PA
Sherri Twitty - (Caregiver)
Pensacola, FL
     
Thomas M. Vassallo - (Vendor)
Santa Barbara, CA
   

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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